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Cluster Headache Branding Project

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We're taking the good, the bad and the ugly!  Well, maybe not the ugly, lol....but hopefully you're ready to fire off about 5 ideas you've had over the years and bump up the understanding of what we go through a notch or two via a single sentence.  I bet there's some good ones in our threads over the years too!  Cheat, go find them!  lol

One of the goodies passed out at the conference was the "Branding Project" flyer. 

NIKE has... Just do it!

LOWES has.... Never stop improving!

CLUSTER HEADACHES,_______________________? 

The Goal:  To insert our own punctuation mark to better inform any audience (print, video and/or conversations) exemplifying, more clearly, the reality of life with clusters 

Here's why:

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I just wonder whether some of the amazing imagery that's been created might communicate even better than words.  Some amazing tattoos, some amazing art for the auctions.  (There's the Munsch painting, which is what started me thinking in this direction.) 

Just picking one image pretty much at random as an example, with a possible very preliminary caption.  Sorry the image is so big.  I don't know how to make it smaller.


Cluster headaches. This is what they're like.  We're trying to put an end to them.

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The branding thingy is a good idear!

And I like CHf's idea.

This branding example is most excellent IMO:

Cluster Headaches; Like dying daily but never actually getting to leave!!

But wuh-ohhhhh, what have you unleashed now Cindy???!!!

Post your practice funnies in the thread (we all need the laughs & I think it helps to get those juices flowing!!!)

Cluster Headaches; Whose brilliant idea was it to call the most severely painful condition known to mankind a HEADACHE???!!

Cluster Headaches; I'm not particularly fond of them at all!

Cluster Headaches; NOT really any better than a poke in the eye with sharp stick!

Cluster Headaches; Take that silly shotgun out of your mouth, "busting" may get rid of these with a lot less icky mess!

Cluster Headaches; Sufferers are finding one of nature's mind blowing substances can keep them from wanting to blow their entire HEADS clean off!

Cluster Headaches; Take 1.5g of dried mushrooms and call me in the morning

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Cluster Headaches; Like dying daily but never actually getting to leave!!

Rereading, this one makes me want to say.....

Cluster headaches, Purgatory of pain!

I love your blast of thoughts Jeebs!  Keep 'em coming.  It's the story of how "Teenage Mutant Ninja Turtles" came into being that I recall.  Well really it's a partial story that I recall.  Guys creating the comic strip were maxed out on msg, lol.  Eating Chinese food from the cartons, on the 17th hour of a 24 hour brainstorming session when all the words began to slur together, get hysterically funny just bouncing one-liner after one-liner off of each other when this one was spewed out and it stuck!  I don't recall why I recall this story, lol.  For all I know I could be making it up! 

And I always think of the Bare Naked Ladies song about eating "the Chinese chicken and your brain starts tick'en!" 

That's just to help you visualize!  Not a recommendation of course  ;D

Cluster Headaches; Sufferers are finding one of nature's mind blowing substances can keep them from wanting to blow their entire HEADS clean off!

There's something in this one!  I love the nature word in there Jeebs!  I've asked myself this one, "Is mother nature pissed?  I'd love to see something that references the fact that we've found hope in "natural medicine" or "natures medicine"  hmmmm

Cluster Headache: Is a headache like a stroke is a pinprick.

Oh yeah, a simile is something I find workable too.  I've often described the pharmaceutical medications we're given with this one, "Taking [insert meds] for clusters is like trying to swat a pterodactyl from the sky with a flyswatter!"  lol, too wordy I know, I know...not too mention pterodactyl isn't a word people recognize instantaneously. 

CHfather, Oh yeah on the art!  I think this one is titled "The pain of clusters".  So powerful.  Here's the link to see more of her paintings at Deviantart and to comment on this one.  agnes-cecile did a fantastic job at capturing the visual and emotional truths of clusters.  So with this one I always think of the old jokes, which never really were jokes.  They fit more into the "That's not funny, that's sick" catagory....."What's black & white and red all over?"


One thing I know about cluster people, they're creative so I have no doubt we're going to nail this concept and make the world listen as though it's E.F. Hutton speaking! 

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Taking [insert meds] for clusters is like trying to swat a pterodactyl from the sky with a flyswatter!

That one is brilliant.  :) I would insert "pain meds" or "pain killers" in there because I think those clearly telegraph the message. Maybe even insert the word mere in there also:

Taking mere pain killers for clusters is like trying to swat a pterodactyl from the sky with a flyswatter!

And the more I think about the painting CHf posted the image of, the more I think it, combined with a super punchy slogan below it, could be the ultimate branding.

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“If you enjoy a nice ice cream headache from time to time, you would love cluster headaches—same basic thing, except way more intense, fifty times longer, and much more frequent.”

Some thoughts, for whatever they might be worth.

I try to mention cluster headaches to practically everyone I meet. Partly, thatÂ’s just to try to spread awareness, but also, I figure you never know . . . maybe someone will have something or know something that we can use. In hundreds of conversations, IÂ’d say these are the four themes that capture peopleÂ’s attention most:

1.      Medical experts call them “probably the worst pain that humans experience” [Goadsby said this; others have said close enough];

2.      They can ruin lives;

3.      The suicide rate among people with cluster headaches is 20 times the national rate;

4.      Psychedelic drugs are the most effective way of treating them.

I have never found a way of simply describing the pain itself so that people really get it. But “worst pain that humans experience” gets sufficient attention, and sometimes I have a chance to go on to say that medical professionals have compared it to having a limb amputated without anesthetic, and that women with CH say that the pain of childbirth is nothing compared to CH. 

It seems like maybe we need a distinction here between “branding” CH and branding ClusterBusters.  Lots of medical conditions have been very cleverly rebranded. Those of us who are old enough will remember “bad breath” getting rebranded by Listerine as “halitosis.”  Heartburn has been rebranded as GERD; impotence has been rebranded as erectile dysfunction.  But of course this is just giving new names to conditions that people already recognize (so that products can be more easily sold to treat those conditions), which is not the case with CH.

As has been said so often, including in this thread, it would be nice to rebrand/rename CH and get rid of the “headaches” part, since that gives such an erroneous first impression. But in a sense, that was done with the “suicide headaches” title, even though the word “headaches” is retained. As I mentioned above, the “suicide” component, at least in my experience, gets people’s attention; they can begin to imagine how bad pain the must be—not just a “headache.” Puts it in a different category than the migraines people so often bring up when you mention CH.

I guess maybe the nice thing about an image is that you might be able to do both—“brand” CH and also talk about CB (as I suggested in my earlier post).  If I had to use words alone, my inclination would be the Goadsby quote in some form.  It’s not clever, but I guess I don’t want people to have to work to understand what’s being said.

As for branding CB, my guess—completely a guess—is that the branding has to be much broader than the use of “natural” treatments. The description at the website and in other documents is “dedicated to finding relief from cluster headache through research, education, advocacy, and support.”

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It's not science fiction.

It's not science fiction:

  People walk among us, silently, fearing at any moment the Monster that attacks their head with savage pain, and leaves without a trace. Until tommorrow. Just like yesterday. 

Cluster: the attack of the Monster.

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I totally agree with you CHfather.  Clarifying our goal is almost a two step process.

It seems like maybe we need a distinction here between “branding” CH and branding ClusterBusters.

Hopefully, one will compliment the other.  With the right cluster headache "tag line" marketed initially by Clusterbusters during the HOH event, we'll enjoy even more brain-storming to link whatever is chosen into a successful complimentary marketing campaign.  Where one feeds into the other to create a nice synonymous package.

What's interesting is that Goadsby has gone on record stating he'd be willing to get involved in the process.  In this video clip he suggests starting with nomenclature of episodic and chronic with a change to remitting and unremitting.  I personally really like it because I feel remitting and unremitting are NOT associated with "blame".  Chronic is a word that conjures up whining and relentless behaviors in a way that doesn't necessarily "empower" the patient, the pain they experience or any of the other ordeals or patient group seems to go through almost as a societal tacit agreement due to the meanings of the current choices of descriptive words.  LOL, sorry, am I preaching to the choir here???   Forgive?

These series of 9 videos where recorded in Nashville in 2011. The first video is the one where Goadsby addresses several points within this topic.

5:45 mins Begins talking about the willingness of the International Classifications of Headache Disorders.

7:27 mins Introduces episodic/chronic vs remitting/unremitting

8:26 mins Briefly mentions how he knows the cluster headache world doesn't like the words, "cluster headache" as a diagnosis but he can't do anything about that at the moment.


What's also encouraging is that the World Health Organization is behind the use of the classifications and the 3rd edition is still being edited and most likely won't be done until 2014.  If we create a splash with this project, we may feather right into the next edition! 

Cindy's sort of an idealist on a mission :) lol

I do love these discussions.   :)

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